Archive for the ‘mixed connective tissue disease’ Category

Well aren’t you so glad that you didn’t get to Psychscribe’s site only to hear more of the same…after a while I bet you started to feel itchy yourself!

Well I’m cheerful today because I feel good and its a gorgeous day here where I live. Green, green everywhere and glorious sun already at 9 am, after a week of rain. And our rhodies are beginning to bloom.

2. I have this whole week off to recuperate, which I will do by making my jewelry and learning Photoshop elements.

3. I have discovered the joys of Polymer Clay.

4. My daughter is starting her 6th month of pregnancy.

5. Less than 3 months till my son’s wedding.

6. I joined Twitter just to see what it was all about (not much!) but now I have this whole list to add just to SAY something. Depth is discouraged on Twitter by limiting the amount of lines you can write. It IS supposed to be a good marketing tool though, which I want to use once I get my business with my sister up and running.

7. Life is once again interesting now that I’m able to look beyond the confines of my body.

8. Umm…that’s good enough, yes? I was actually sitting here for a moment trying to think of two more things to make an even 10…why I have no idea. Too many memes.

My previous post was tongue in cheek…but now, this is living hell…the constant itching is actually painful…dr has increased my antihistamine to the point that it knocks me out…when i wake up there is a 1 hour window (now) before i can take my next dose…i have to choose what feels like induced coma, or suffering…the lupus is making me suffer, exacerbating and extending the allergic reaction

4:00 a.m. – A lupus story because its about my severe allergic reaction to a lupus drug, said reaction being amplified because the lupus has joined with the evil allergy forces to destroy the effects of a drug intended to help me.

This has been the most miserable week of my life-..i have not been able to do anything but lie in bed with ice packs on me to relieve the itching – every itch inch of my body- I wake up every 1.5 hours bz of the itch – i’m on steroids and antihistamines- my face is puffed up into a balloon – my ankle is just fractured but still a pain the in ass, i have to wear a brace with sneakers- i only stayed in the hospital overnight because the doctors said they really couldn’t do anymore for me and it would take 2-3 weeks to clear up! they warned that the rash would get worse before getting better, but they did NOT warn that the itch would apparently do the same – it feels like tiny little ants crawling around beneath the surface of my skin, occasionally nibbling at my blood vessels -so at 8 am this morning Alph and i will be parked on the dermatologist’s doorstep, the doctor who saw me in the hospital, for a re-evaluation – no appointment, just begging and if that doesn’t work demanding to be seen.

Alph has been wonderful through all this. Poor man. We have a health crisis every year. Truly. But this was the firat time he had to call 911 for me. I was commiserating with how awful that must have been to hear me fall to the floor and then come running in to find me unconscious , staring blankly up at him as he tried to rouse me. He replied in his best John Wayne voice, but seriously, “A man does what he has to do.” For you kids too young to have ever heard of John Wayne, he was a tough guy movie cowboy, but a gentleman on the inside with a heart of gold.

He has never left my side. John Wayne bringing tea and cookies and pasta and comfort food and infinite patience..all with the swagger of his youth. Always making me feel nurtured and protected, even from a barrage of disease bullets. God I love this man.

1:00 pm – Well what’s wrong with me other than the madness factor that I expected to be refused to be seen? The office staff was very nice and so was the doctor, who none-the-less said he couldn’t do anything for me. It will take another week and a half to slowly improve and I’ve gotta gut it out. Oh, and the ice packs I’ve been doing have made the symptoms worse due to a rebound effect.

The worst part of it all, the absolute worst, was that Alph was in the examining room and I had to put a gown on and I felt so objectified, ugly, helpless, and embarrassed in front of my own husband when the doctor needed me to stand and take it down so he could see what was going on.

Why should I care, you ask?

Would you want your Hero Prince Charming to get a fast forward of your naked self under flourecent lights, which everyone knows age a woman’s body by about 20 years in the best of circumstances? Red spots bursting out of the pink blotches on your already sagging, steroid water weight skin? What if he was traumatized by the sight? What if….you know….?

Its Mother’s Day here in the USA. I’m a mother home very sick with a lupus complicated drug reaction. Since this is Lupus Awareness Month, I hope to blog something every day about lupus in order to increase awareness. If you want to help me, please share the info and links on your blogs. If you are a woman, or love someone who is, you really need to know more about the effects of this devastating disease:

You’re not alone
Together we stand
I’ll be by your side
You know I’ll take your hand
When it gets cold
And it feels like the end
There’s no place to go
You know I won’t give in
no I won’t give in

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say (nothin’ you can say)
Nothing you can do (nothin’ you can do)
there’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

So far away
I wish you were here
Before it’s too late
This could all disappear
Before the doors close
And it comes to an end
With you by my side
I will fight and defend (ah ah)
I’ll fight and defend (ah ah) yeah yeah

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
Nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
[Keep Holding On lyrics on http://www.metrolyrics.com%5D

We’ll make it through

Hear me when I say
When I say I believe
Nothing’s gonna change
Nothing’s gonna destiny
Whatever’s meant to be
Will work out perfectly
Yeah, yeah, yeah, yeah….

La da da da, la da da da da
La da da da da da da da da

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

Ahh, ahh
Ahh, ahh
Keep holdin’ on
Ahh, ahh
Ahh, ahh
Keep holdin’ on
There’s nothing you could say
Nothing you could say
nothin you could do
nothing you could do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

First, this picture is not me. I found it on google images. I WISH i looked this good…

Not good, people. Not good. I was given the drug Plaquenil to add to my autoimmune disorder arsenal by my doctor a few weeks ago with the goal of weaning me off the prednisone. I am now covered in a rash from hell over 75 percent of my body. EVERYWHERE you can think of and don’t WANT to think of. And the non specific lupus type disorder I have is gleefully helping the reaction to reach its fullest potential.

Long story short, the morning that my slowly developing rash blew into a full blown stage 3-4 allergic reaction, I also fainted and broke my ankle. So I spent the day in the ER, and was admitted. They were more worried about the fainting in case it signified something serious. It didn’t. AFter mega dollars in testing the fainting was attributed to an episode of low blood pressure.

I look like a monster. I feel like a monster. I have red, elephant ears. You can barely see any skin beneath the eruptions. My face is masked with them…Does anyone have any recommendations for excriating itching? I”m taking steroids and antihistamine but topically nothing is offering much relief except ice packs. Oatmeal bath – so so.. Coritsone cream the same…. wahhhhhh!!!! 😦

Well, I saw my rheumatologist today. He said my blood work indicates not systemic lupus, but mixed connective tissue disease. He was quite cheery because he said it does not attack the organs like systemic lupus, so this is great news and I should be relieved. But me being me (and most of you being you) I researched it online.

“Mixed connective tissue disease, as first described in 1972, is “classically” considered as an “overlap” of three diseases, systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern illness have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of three component illnesses, most commonly scleroderma.

It is now known that overlap syndromes can occur that involve any combination of the connective tissue diseases. Therefore, for example, patients can have a combination of rheumatoid arthritis and systemic lupus erythematosus (hence, the coined name “rhupus”).”

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Disclaimer: This site is a creative outlet for the author and is not intended for individual, professional advice. The author can take no responsibility for people in crisis. If you need immediate help, please call the suicide hotline
1-800-273-TALK (8255), call 911, or go to your nearest hospital emergency room.